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feeling very low at moment need inspiring words!!!!

20 replies

knat · 15/01/2008 14:30

DD is 4.3 and is being assessed at the moment, first appointment with Ed Pscyh and Paeds next week. From what I can gather there may well be a tendency for Aspergers obviously I dont want to read too much in to it until seen experts but that's my gut feeling. Her main problems occur at preschool for which this is her second year. I have great difficulty getting her to leave preschool (even though she never wants to go) she's never dressed (ie coat and shoes) when i go to get her and shes still playing with a teacher at this time as i think this is what keeps her ok otherwise she's kicking and screaming before i get there and it disrupts everyone. i have to go every day with a strategy in mind to try and get her away peacefully (sometimes these work to varying degrees). Im just so fed up of having that sinking feeling every time i go. She came home today not too badly (could have gone either way) but was extremely distressed and upset when she did get home saying she didnt like school she wanted to stay home. She didnt like sleeping (!) and just generally upset. When she's at preschool she is quite angry and aggressive at times and her main breaking point is snack time (which she doesnt always have because she gets too upset). Obviously seeing the experts may help with some coping techniques (i hope!) but just feel so saddened to see her so upset and just think if preschool is making her so angry and upset should she be going but on the other hand doesn't she need to be in that environmen tin order to learn to cope? This year hasn't got better at preschool the firs tyear was definitely easier although certain issues were still there.

To top it all I'm eating for England, have a rash, a cold and generally feel rubbish!!! Sorry that wasn't meant to be poor me just fed up today and just want to help my lovely little dd.

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needmorecoffee · 15/01/2008 14:49

big hugs. ds1 used to have to be carried into preschool and then school every day for 3 years screaming and kicking. He has Aspergers.
Then I found about about home education, took him out and he became a different child. 7 years later at 13 he asked to go back to school and has been there a year and coping well.
I don't think Aspies 'learn to cope' through school. Some might give up and be appearing to cope though. Having ds1 home allowed him to come to things in his own time and now he even tolerates poeple in the house and will talk to strangers! He's done it in his own time and I think home education has literally saved his life.

knat · 15/01/2008 14:57

thanks. Home ed is something i've recently been thinking about. DD is ok with strangers and people coming to the house in terms of she will speak to them in varying degrees and seems ok in differnet situations ie birthday parties etc - although usually she plays by herself but is happy in that environment. What age was he when you home ed? I m thinking depending on how the assessments go, i might try her in school for a period (6 months or so) and if no improvement take her out then?

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deeeja · 15/01/2008 15:45

I realy feel for you knat. My ds who is 5, is in reception. He has been the same. Lately his school has expanded and more children have stated, and he has been comeing home hand having huge meltdowns, and being generally very angry, shoutingand throwing things. He has also said that he doesn't like his school, his teachers, or me for that matter.He is also being assessed for aspergers. He was ok in pre-school, but now his problems are really coming out, and he stands out amongst his peers.
One of the things I am going to ask school for is a quiet room, he has a 1;1 that he shares with another boy at the moment, which has helped, but at home he goes crazy.
Has the school told you about any strategies they are going to put in place for your dd, while the assessment is under way?
There are things they can do, to help your dd to access the curriculum.
Best of luck,x

mymatemax · 15/01/2008 16:23

HI Knat, Its an awful feeling leaving your child, knowing they are unhappy or not coping, so I feel for you.
DS2 hated going to pre school & would still rather stay at home than leave the house but he has managed so much better once the school & us understood his distress & put in place strategies to help - it's not perfect but at least we all know we are doing all we can.
Although it can be controlling for everyone else, ds2 understanding & having clear structure to his day has helped, along with quiet areas for him to sit at. He has a little desk & chair in the corner & if he can't cope with a group situation he knows he can sit alone, also the school understanding & allowing him to be different & not always trying to make him conform has helped. So what if he has to sniff the desk every so often & lick the windows, its not harmful & helps him cope.

I am glad we persevered at pre school as I think my battles with him at school would be far worse had we let him stay at home. I'm not sure if ms is the right place I'm sure somewhere down the line we may be looking at sn schools but I do feel he is gaining far more from school than we can give him at home.

I hope your dd gets the support you all need xx

needmorecoffee · 15/01/2008 16:56

Hi Knat. ds1 was 7 when we took him out after 3 years of hell. I feel ashamed I didn't rescue him sooner. Home Ed has been fantastic for him as a person and to allow him to deal with the world at his own pace, something many kids with Aspergers need.

knat · 16/01/2008 09:49

thanks everyone. Preschool have been v good and she does have a quiet area and a box with all her favourite things in , ie books, toys etc that they use to try and calm her down and its specifically for her. As regards clear structure dd knows what the structure is but this doesnt seem to help her in some ways when she knows what's coming next its worse!!!! Even though its so hard I am perservering with preschool and unless otherwise advised I will look at sending her to school in September but i things don't improve then I will look at HE. Just to hate to see her so distressed and confused!

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Peachy · 16/01/2008 09:57

Agree with NMC about home ed- my ds1 has additional learning disabilities (dyslexia)and aggressive behaviours so can't realistically be home edded, but if his dx was pure AS / FA then yes, it would be a possibility and one that would be very successful for him I think.

coppertop · 16/01/2008 10:27

The OP sounds like a description of ds2 (AS) in his last year at pre-school. The first year was okay but the second year was when it all started to unravel. He used to get upset and ask to stay home but I carried on with it because I was worried that he would find it harder to cope with the transition to school in the following September.It didn't stop me feeling guilty about it though.

His usual complaint was that he was bored. FWIW he settled in at school very quickly, although he still has difficult days.

Having a back-up plan is a good idea and helps to take some of the stress away IME.

I hope you start to feel better soon. xx

bullet123 · 16/01/2008 20:28

I'm going to repost something I wrote last year:

Once upon a time there was a little girl. As a very young girl she frequently ran away from her parents. She threw violent tantrums. She hardly spoke to anyone but her mum and even then she rarely initiated or asked for anything. When she got a little older she could talk more to people - and have conversation - but there were still difficulties. She talked too fast, so nobody but her mum could understand her. She spoke through her mum. She would daydream and verbally stim and she still rarely initiated. She was able to talk about some things, but rarely about what she wanted, or needed. She had toilet accidents because she couldn't tell people she needed the toilet - and sometimes she herself didn't realise the signs until too late. Sometimes she would hear words but not understand them. Other times she would have perfect understanding, but couldn't get the words out. Other times she would latch onto a topic and could not be distracted from it. She loved to stare at a small mark, or a line in front of her and focus on it. She flapped her hands. After a while she left home and for several weeks just ate one slice of toast and a yoghurt every day for weeks on end. She didn't wash properly, didn't realise to comb her hair, so it got tangled and her mum had to cut it out. She couldn't organise herself properly at all. And the years went by and she never ate properly until very recently, she still can't organise her own personal self help skills, she has a degree but can't get a job that utlises that degree unless she works alone, due to her difficulties interacting with people. Today she walked through some dirt despite the fact her husband had warned her about it five seconds before, because she got distracted.
Yes, you read right. Her husband. She got married ten years ago and the marriage is very happy. She has two young lads, one on the spectrum, one not and she can look after those lads with no problems. In fact, her obsession with detail and her wish to do everything correctly meant she fitted into the role of mum quite easily. She goes on parenting forums and has met and talked to other mums. She writes creatively, jokes, laughs and uses her head for trivia and recalling bits of information all the time. She still stims, still has obsessions, still finds it very difficult a lot of the time to express herself verbally, but she's managed to have jobs, get married, have children and run a house.
In case you haven't guessed, I'm talking about myself.

knat · 17/01/2008 09:57

thanks bullet. I know that what dd is experiencing now will not necessarily mean that she wont have a"normal" life its just knowing how to cope with it now and try and help her as much as I can. A lot of what you have written rings very true of my dd , especially regarding toiletng and distraction and flapping hands. I am not despondent about my dd just anxious to try and help her in trying to make the world a less confusing place for her if I can.

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bullet123 · 17/01/2008 11:10

When Ds1 was getting assessed my mum admitted that she used to lie awake at night worrying about me.
With you being more aware than my mum was of why your dd will be reacting and behaving in certain ways, you will be able to help her a lot .

knat · 17/01/2008 16:08

thanks just had paeds nursery nurse and she was very good. She said that 8 out of 10 parents didnt want to know about any problem or do anything about it but i was so open about things that it was great. We did discuss Aspergers and she did think this might be the way it was going. She did say that the paed drs were very slow to indicate dx but as i was the way i was he may say a bit more when we see him next week and she will actually put in her report that i mentioned aspergers.
She said that dd was lucky to have me which makes me feel a lot better about things although tody has been quite an emotional day with dd not being at her best and with the assessment this pm, psych assessment on Tuesday next week and paeds on Thursday there's a lot going on at th emoment!!!

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ancientmiddleagedmum · 17/01/2008 16:23

Bullet, you give me hope. I dream of my autistic DS finding a lovely, gentle wife one day who will understand him and care for him (when me and DH are gone). Can you remember what it is like to be an autistic/aspergers child, and give us insight into why you still sttim, is it excitement?

bullet123 · 17/01/2008 17:12

I can tell you about my childhood, but I don't want to give you a wrong impression. Whilst I was noticeably different (to the extent that back in the 1980's there were calls for me to be assessed and when I was diagnosed my mum didn't bat an eyelid) I was (and still am) what would be classed as high functioning. By which, on a personal level, I could attend a mainstream school (though secondary school and the larger primary school I attended age 10 -11 were much harder and more confusing than the small village primary I attended between the ages of 6 -10. Plus, I could have conversations with people (tangential speech, very fast way of talking, rarely initiating and coming across as being very serious not withstanding. So, if your child is more severely on the spectrum I don't want to give you the wrong impression.
Ok, I'll begin :
One thing that does sort of jolt me up and then DH has to remind me I'm still like it in a lot of ways, is my lack of awareness with a lot of things. I don't mean when reading things, I can be quite perceptive in that respect, but in my ability to take note of what is going on around me and to be aware of what others are doing/saying. Things that you would expect a child to remember, I have no memory of. I cannot remember any birthdays before the age of 7 or 8. Apart from a brief scene when I was 3 I can't remember any Christmases before this time. Any trips out, my first day of school, The Falklands War (not that I'd expect a 6 year old to be much aware of that, but I only knew about it years later), I cannot recall. But, I can remember the green light shining on my socks in a fairground ride. I can remember the flat cobbled tiles on the street and how my feet just fit into them. I can remember my dad bringing the coal in when I was 18 months. So, big events held little importance for me, what I focused on was the small, the seemingly trivial. As I got older this difficulty in awareness lessened, but it continued and still applies today. At 15 I had an accident in Church (I was toilet trained at a normal time but due to mainly communication problems continued to have accidents until my mid to late teens) and was about to walk up the aisle for Communion, completely unthinking that others would notice, before my dad saw me and stopped me. More recently ,I have missed whole shouting matches within a few feet of me, have not noticed people talking to me, or if I have noticed have often not been able to respond.
This next bit is hard to write as it sounds so negative and I want to reassure you that this is just me and not every person on the spectrum feels like this, but I do not feel much emotion or often realise that others will be upset at something unless it is specifically pointed out to them. That doesn't mean I don't have sympathy and that I won't comfort them. Also, if someone is crying or arguing next to me, even if it has nowt to do with me, I will start crying, which indicates genuine empathy on my part, rather than presumed empathy. As a 9 year old I watched a government safety film that had showed the deaths of two family members and I was genuinely surprised at the mum grieving . I have never really got upset at big things, but trivial things can really throw me. Eg they have moved the newspaper rack in my local supermarket. Whenever I went in I would turn to right a little and go straight to the newspapers. Now they have shifted them and it doesn't feel right. Same as when I was a child, my dad being lucky to survive a car accident led to me feeling nothing, the bruises on his head made me revulsed.
Speech, well, I was verbal and to the extent that you could have a conversation with me, but there are still difficulties. I struggle with initiating and now I will rehearse in my mind what to say if I want to initiate talking. This initiating also affects other aspects of my life as well. As a child I would rarely initiate talking. I woudl speak very fast, I've slowed down to a normal pitch now. Today, you wouldn't think there was anything odd, apart from a tendency to perseverate on one topic, talk of things out of context, have difficulties knowing when to enter a group conversation and having tangential speech. My use of language has always subscribed to the Gilberg criteria for Aspergers of "superficially excellent expressive language" (I am paraphrasing here). As a child I would often speak to other adults through my mum and now I often do it through my husband.
I had obsessions and still have obsessions which were - and still are - very important to me and, in many ways, did end up helping me. But with hindsight I can see where they could cause difficulties or concerns sometimes. To give you one example, when I was about 9 I kept getting the same book out of the library for about 6 months (mum stopped me in the end). It had a red silky ribbon as part of its attraction .
I've not covered everything by a long shot, but this post is getting rather long, so I'll just mention the stims. Sometimes I stim because it feels nice and relaxing. Other times I stim because I'm getting wound up over something and I can't block the worrying/overloading thing out. And sometimes I don't know why I stim, it just happens.

ancientmiddleagedmum · 17/01/2008 17:23

This is so fantastic Bullet - I feel like you are giving me a window into my DS's and also my DSD's minds. I think you have a lot of empathy and a great ability to describe things - don't they say that women with Aspergers/ASD have it easier because they are naturally more emotionally in tune anyway? I always remember when I was crying once and my DH, who is not autistic but who is a man, just sat there. I suddenley realised that he literally did not know what to do, so I pointed out to him that it is appropriate to put your arm round your wife when she is crying and make some sympathetic noises. He thought I wanted him to go away, because I was hiding my face from him! I can understand what you say about not remembering Christmas, but remembering the cobbles and the green light, and I think my DS would identify with that if he could talk properly. He goes through phases of absolutlely loving certain objects, carrying them around with him. He is not as HF as you are, but he is so affectionate and loving with the adults in his life. My stepdaughter sounds similar to you - she seems completely normal, apart from ever so slightly over-precise speech, or not quite getting jokes. She struggles a bit with friendships though -did you make friends as a child?

bullet123 · 17/01/2008 17:58

In primary school, up to the age of 10, when primary school could be based on playing tag with someone, or playing hide and seek, things weren't too bad. The difficulties arose when the concept of friendships and peer relationships began to change in the last year of primary school, whilst other girls started to talk about who they liked and disliked and eventually about boys and fashion, I was left further and further behind. I had no wish or awareness to even pretend to like to talk about the things they did. I saw nothing odd in reading a book or sitting by myself whilst they were grouped, gossiping. People say that Aspergers females can "hide" because they put on a social "mask". If you don't know you should be putting on this mask then you can't do so. In a way my inability to realise I should try and mask things, or to pretend to be into fashion and music helped me, as it saved me a lot of stress and worry.
Up until I was 28 the closest friendships (with the exception of dh) remained at a level similar to that you'd have after being at a new job for a few weeks. You can talk to people, be polite, laugh at their jokes, even make some yourself, but you won't call them on the phone for a chat, you won't arrange to go into town with them, you won't tell them how upset you are at something, or moan with them about your latest boyfriend (actually I've only had 2 boyfriends and one of them only lasted nine weeks). They were rirends of friends, or work colleagues I was on friendly terms with. But when I was 28 I made a friend through an internet forum who turned out to live in the same town as me. I have never phoned her for a chat, we don't see each other very often and ninety nine per cent of communication is via email, but I still count her as a real friend. Total Chaos on this site is another friend, I can "talk" online to her about pretty much anything but I still can't phone her up or text her.
DH has to tell me when he's upset a lot of the time. If someone is crying it's obvious to me and I can comfort them. But a sad tone, a particular word, I won't usually pick up on and will have to be told.

ancientmiddleagedmum · 17/01/2008 19:15

Very interesting - my DSD is also now coming in to the teenage years, when TBH girls' friendships become tricky even if you're not on the spectrum. Girls can be so cliquey and bitchy! I think she is quite interested in fashion etc, so that might help. You are amazing, you should write a book a bit like Luke Jackson's.

bullet123 · 17/01/2008 20:37

No, no book from me . There is greater understanding now, so hopefully your dsd should be ok. To be honest, I think that when you're high functioning, the people who have it hardest socially are the ones who are firstly aware how much they're different and secondly try and fit in and compensate. I went through some awful bullying, but by being myself and not thinking to try and fit into a particular group or trend and, to be frank, not really desiring much company, I coped more easily than if I'd have tried to vbe the same as everyone else.

iwearflairs · 17/01/2008 23:01

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This has been withdrawn by MNHQ at the poster's request.

Mousie · 18/01/2008 18:25

really interesting point about a mixed secondary not all girls. my dd much better with boys, girls so much more sophisticated, less accepting and aware of her differentness.

good encouraging posts, thanks

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